Film documents medical conflict

Lyme activists seek better treatments

Denise Faggart says it was one of three sesame-seed-sized ticks she pulled from her daughter four years ago that plunged her family into the nightmare that could have left Kalyn blind.

But it was the N.C. Medical Board's decision to disallow the treatments to fight her daughter's Lyme disease that made her an activist.

"They were going to let a 15-year-old girl lose her vision when the antibiotics were working," Faggart said of Kalyn, whose symptoms are now gone after 18 months of intravenous antibiotic treatments.

Faggart is part of a vocal contingent of Lyme patients and their families from across the state who gathered Sunday to view "Under Our Skin," a documentary that tells the chilling tale of those who say they were denied treatments for the disease.

The documentary supporting their claims is one of a few hopeful signs for the community of advocates that has grown out of the controversy over chronic Lyme, a condition that most doctors do not diagnose or treat.

Also this year, a national group that established the treatment plan for Lyme disease agreed to review those recommendations, part of an agreement reached with the Connecticut attorney general to settle an anti-trust suit against the group.

"We feel the tide is actually beginning to turn," said Dr. Beth Jordan, a veterinarian and president of the N.C. Lyme Disease Foundation, which held the event Sunday.

The 300 people who gathered in Raleigh to view the film are part of a nationwide grass-roots effort to change the way the disease is diagnosed and treated, said director Andy Wilson, who was in town Sunday for the viewing. Wilson had just briefed members of Congress on the disease and has appeared on national television. He is also attending screenings of his film across the country.

"It gives a voice to people who have been suffering in silence," Wilson said of his film.

The debate over Lyme has migrated from the Northeast, where the disease is most common, to North Carolina, where two years ago Joseph Jemsek, the Charlotte doctor who treated Kalyn Faggart, had his license suspended for treating patients with long-term antibiotics. Restrictions placed on him by the state medical board prompted him to move his practice to South Carolina.

Despite the claims of Lyme activists in North Carolina and the harrowing experience of Kalyn Faggart, state epidemiologist Jeffrey Engel says there is no evidence that Lyme disease has been contracted in North Carolina, where the deer ticks that carry the disease are not as common as other types of ticks. Instead, North Carolina residents who have Lyme likely contracted the disease in another state, he said.

Nor have medical studies shown that long-term use of antibiotics can cure chronic Lyme. Instead, the treatments put patients at risk of infection and other complications.

"These doctors are treating patients for months or years at a significant cost to society for therapies that are not proven to be true," Engel said.

Engel is working on ways to find out how common the disease is. Doctors often treat Lyme caught in the early stages with a cycle of antibiotics based on clinical observations alone, without the confirmation of a laboratory test.

Kalyn Faggart started complaining of headaches six months after the ticks bit her. She couldn't concentrate, and her grades were falling. An optometrist feared she had a brain tumor.

Months later, she was diagnosed with Lyme disease. Doctors said the Lyme bacteria in Kalyn's optical nerve would eventually cause her to go blind.

Her condition was improving under long-term antibiotic treatments until they were suspended in 2006 after Jemsek's hearing. Faggart's appeals to the medical board to allow her to continue treatment with Jemsek were denied, and she sought out another doctor out of state.

In all, Denise Faggart said she spent $50,000 on treatments and traveled 15,000 miles.

Kalyn's vision is perfectly normal now, and she just earned her driver's license.